A systematic review of quality of life instruments in long-term breast cancer survivors

Five studies assessed the effect of breast cancer and its treatment on overall QoL among long-term BCS [28, 29, 34, 39, 40]. The results of the study by Dow et al. [28] indicated both positive and negative long-term effects. The positive outcomes included hopefulness and presence of positive change after treatment. The major concerns included fatigue, aches and pains, sleep problems, psychological distress from cancer diagnosis and treatment, fear of recurrence, family distress, sexuality, family burden, and uncertainty which had negative impact on overall QoL. Helgeson et al. [39] indicated difficulties in physical functioning in disease-free BCS. Additionally, the survivors with recurrence had poor QoL compared to the survivors without recurrence. Weitzner et al. [29] assessed overall QoL as well as relationship between mood and QoL. They compared long-term BCS with women in breast cancer screening group. The results showed that BCS had a high incidence of symptoms related to depression and trait anxiety, resulting in lower QoL. The patients with advanced stage of cancer had poorer QoL. Kornblith et al. [34] reported that majority of the BCS presented a significant recovery from their cancer diagnosis and treatment, but some survivors reported cancer-related emotional and medical problems due to lymphedema and numbness in hands and feet that interfered with their QoL. Carver et al. [40] investigated the effect of medical, demographic, and psychosocial variables on different aspects of QoL. The study showed that medical variables such as stage of disease and treatment intensity were strongly associated with financial problems and worries about appearance. The psychosocial variables, such as earlier trait optimism, confidence about remaining cancer free, and perceptions of available social support predicted variations in psychosocial aspects of QoL. The demographic variables including older age at cancer diagnosis, more time elapsed since diagnosis, being non-Hispanic white, being more educated, and having employment predicted lower psychosocial distress.

Three studies examined the relationship between life stage variables (survivor's age at diagnosis and number of years of post-diagnosis survivorship) and QoL [31, 33, 36]. Cimprich et al. [33] categorized their sample into three groups based on their age at diagnosis: younger age (27-44 years), middle-aged (45-65 years), and older age (> 65 years). The younger-age at diagnosis group showed poorer outcomes in social aspect, with major concerns being changes in self-concept and appearance. The group of patients who had received diagnosis at an older age had the worst QoL in relation to physical well-being, with major problems being fatigue, pains, sleep changes, and constipation. There were differences in the psychological aspect also. The concerns of older-age at diagnosis group included feeling less useful in life and uncertainty about the future. The younger-age group at diagnosis showed psychological distress related to family distress, diagnosis, and treatment. Interestingly, the QoL improved with an increase in the number of post-diagnosis years. Casso et al. [36] used a sample of BCS who were diagnosed between the ages of 40-49 years. Their findings suggested a varied response to QoL depending on the type of breast cancer treatment received. Women who received adjuvant systemic therapy had poorer QoL outcomes in physical, psychosocial, and sexual aspects compared to women who did not receive adjuvant systemic therapy. Similarly, women who had mastectomy reported more physical concerns compared to women who had breast conserving therapy. Moreover, the presence of breast-related symptoms such as pain, swelling, and numbness resulted in poor QoL. These concerns, however, were not affected by the number of years post-diagnosis. The study by Holzner et al. [31] focused on the effect of time elapsed since initial diagnosis on QoL. The reduced QoL was observed not only in patients in the first two years after initial treatment but also in patients with a survival time of more than 5 years. The authors observed a "rebound effect" (a recurring reduction of QoL after initial improvement) in their study, particularly in the psychosocial aspect of QoL. It was suggested that the long-term BCS's concerns arose with the necessity for regular aftercare visits, chronic physical long-term effects of cancer treatment (arm swelling or scar pain), and fear of possible recurrence which makes the survivors continually aware of the illness they have survived. A similar pattern was observed for the aspect of role functioning, where patients reported the difficulties in occupational tasks, organizing leisure time activities, and pursuing their hobbies.

Two studies examined the effect of different age groups on QoL [35, 42]. Sammarco et al. [35] assessed QoL in BCS older than 50 years of age. A significant association was observed between perceived social support and the physical aspects of QoL. The findings suggested that the unpredictable nature of breast cancer and its treatment coupled with the presence of other diseases or functional disabilities of aging resulted in poorer QoL, especially in the health/functioning, socioeconomic, and psychological/spiritual domains. Moreover, fear of recurrence, fear of death and suffering, and concerns regarding payment for the healthcare costs affected QoL among older survivors. The increased uncertainty in illness negatively impacted their QoL. Perkin et al. [42] evaluated QoL in survivors aged 70 years or older and reported a significant association between health status variables of physical functioning, life satisfaction, depression, and general health perceptions.

Four studies evaluated the relationship between long-term effects of breast cancer on QoL and ethnicity [30, 40, 43, 44]. Sammarco et al. [44] assessed the overall QoL among Hispanic BCS. The findings showed that perceived social support and uncertainty were important in providing improved QoL in this population. The Hispanic survivors experienced a higher degree of uncertainty and were not aware of the available social support resources which affected their QoL. Their major concerns included family distress, socioeconomic problems, and problems with health and functioning. Another study by Carver et al. [40] in the Hispanic population, observed that Hispanic women reported elevations in several kinds of problems: negative feelings, social avoidance, distress about the family's future, and distress about the possibility of recurrence compared to all other ethnic groups. Leak et al. [43] examined the overall QoL among African-American BCS. Sleep disturbance, pain, and fatigue were the most commonly reported symptoms in this population. The overall high QoL scores were attributed to the relatively high level of spirituality, which helped them cope with cancer. Ashing-Giwa et al. [30] also compared the overall QoL among African-American BCS with Caucasian BCS and reported an improved health status and fairly good overall QoL in both the groups. The differences in QoL between the groups were not attributable to ethnicity; instead they resulted from differences in the socioeconomic and life-burden factors.

Four studies evaluated the effect of breast cancer treatment on different aspects of QoL or overall QoL [32, 37, 38, 45]. Beaulac et al. [32] examined the effect of lymphedema on QoL resulting from surgical treatment. The authors observed that lymphedema resulted in decreased range of arm motion and women with lymphedema reported lower breast, functional, and physical wellbeing. However, the lymphedema related problems were not affected by the type of surgical treatment (mastectomy or breast conserving surgery). Additionally, Burckhardt et al. [38] focused on BCS with regional pain and widespread pain resulting from surgical treatment. Most of the patients experienced chronic pain immediately after surgery or in the early post surgical treatment period which had lingering effects. However, the chronic pain also originated later in the post-surgical period. Skrzypulec et al. [45] examined the effect of surgical treatment focusing on total and partial mastectomy. Mastectomy resulted in physical limitations and interfered with the psychological and social functioning in these women, which in turn adversely affected everyday QoL and lowered the long-term QoL. Ahles et al. [37] focused on long-term BCS who were treated with either standard dose systemic chemotherapy or local therapy (treating a lesion or tumor). There was a significant negative impact on the social and physical aspects of QoL in survivors treated with chemotherapy compared to women treated with local therapy. The major physical problems were fatigue, pain, overall physical health, and menstrual/fertility problems, while the social concerns included interference with activities at home, employment, and financial burden.

Two studies evaluated the effect of non-pharmacological intervention on QoL among long-term BCS [41, 46]. Dirksen et al. [41] reported short-term positive changes in fatigue, trait anxiety, depression, and QoL following cognitive behavioral therapy (CBT) for insomnia in BCS. Perkins et al. [46] showed that Physical Activity and Lymphedema trial (PAL) had beneficial effects on self-perceptions of appearance, health, physical strength, sexuality, relationships, and social functioning, as measured by the Body Image and Relationships Scale.